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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. J

    Further improvement for Dr. Deckoff-Jones

    One day, soon I hope, we will have a viral load measure and all this discussion will be unnecessary. I do believe that the protean manifestations of the disease can all be reduced to manifestations of persistent immune activation. Whatever the phenotype, it seems to me that in the end you will...
  2. J

    Further improvement for Dr. Deckoff-Jones

    I agree with what you are saying. If this makes it clearer, we were essentially from the bed to the couch for years. Now I might be able to work a good part of a day in a chair in a quiet environment (though I haven't done it yet and wouldn't choose to start that way). As a doctor. I guess it...
  3. J

    Further improvement for Dr. Deckoff-Jones

    I don't think anybody is close to being able to answer your question. The best model that we have now is HIV. The Mogensen paper (link on the top of the list on my blog) is fantastic. I've read it a few times and learn something more each time. Lots of answers in that paper. Jamie
  4. J

    Further improvement for Dr. Deckoff-Jones

    I hate rating scales too. I don't have the fortitude to look at the new thread. I chose the Karnofsky Perfomance Score after looking at all of the ones currently in common use for CFS, because it is the most basic. None of them really work for us, because we are very skewed with respect to...
  5. J

    Further improvement for Dr. Deckoff-Jones

    I think the virus, or more likely viruses, are there to stay. I expect to take antiretrovirals for the duration. My guess is that specific drugs are at least 3 years and more likely 5 years away. There are a lot of drugs that didn't make it for HIV on the shelves that might work for X, so that...
  6. J

    Further improvement for Dr. Deckoff-Jones

    I have no personal experience with Ampligen. I have heard from more Ampligen failures than successes, but my mail is obviously skewed in favor of treatment failures. My instinct though is to stay away from immune stimulators. I think that the manifestations of the illness are due to immune...
  7. J

    Further improvement for Dr. Deckoff-Jones

    Hey George, I'm not experienced in the worlds of politics or advocacy. All of my energy is going into trying to understand the science and interpret it medically to best advantage. Clinical trials of antiretrovirals are essential, in my opinion, although I am concerned that ill conceived...
  8. J

    Further improvement for Dr. Deckoff-Jones

    Hi Sergio, I think you hit the nail on the head. Push/crash is one of the most debilitating symptoms, and the hardest to fathom mechanistically. I'm aware that reading my blog is a bit confusing in terms of understanding our uphill course. 3 months ago, when I went to Reno and Ali attempted...
  9. J

    My Antiretroviral Trial

    Sustiva is not a PI and would not be indicated at all. It has some significant psychiatric adverse effects and should be avoided. It appears to have essentially no activity against X in vitro. Jamie Deckoff-Jones MD
  10. J

    3 HIV DRUGS WITH POSSIBLE EFFICACY AGAINST XMRV, by Mindy Kitei

    Jeez, liverock. You're impatient:). We're doing well. Did you want a miracle? I know, me too. But lots of ideas on the horizon for the next steps. Maybe I'm nuts, but things are looking up at my house. I really think the arv's are helping. Warmly, Jamie Deckoff-Jones
  11. J

    Jamie Deckoff-Jones MD Report On Meds

    I am taking standard doses for HIV. AZT 300mg BID and Raltegravir (Isentress) 400mg BID. The dose of tenofovir (Viread) is 300mg once daily. I have heard from people considering AZT once a day. I do not think this is a good idea. AZT has a short half-life. Taking it less often than necessary or...
  12. J

    XMRV-positive Doctor Begs Us to Fight for WPI

    Thank you for the lucid post subtr4ct. I have started a blog at http://treatingxmrv.blogspot.com/ I am planning to share the medicine and science there. I have linked to pdf's of recent papers that are essential reading for any XMRV positive person considering specific antiretroviral treatment...
  13. J

    XMRV-positive Doctor Begs Us to Fight for WPI

    I don't think the science is going to hurry up. The WPI is dependent on private donations. I think it will be patient driven if the drugs work. I think it is all about quality of life and what there is lose. I was an alternative doctor, after my emergency medicine career. I believe that all...
  14. J

    XMRV-positive Doctor Begs Us to Fight for WPI

    Each person needs to make their own decision with an informed physician. Would that there was such a thing available to each of you! In general, the drugs are pretty safe. There is vast experience with AZT. You can grow a healthy baby on it. Many in this group have tried much more dangerous...